FoggyRock General Forum

I swear by melatonin--the time-release tablets for sleeping have saved my sanity over the past 8 years by helping my son fall asleep and stay asleep all night.
Besides that, we are in the thick of biomedical treatments to address gut issues with no resolution so far.  I'm told that my son is one of the "tough nuts" out there as he hasn't responded to most of the treatments that we have tried over the years.  But we're not giving up.  I'll keep you all posted about the new HBOT that arrives at our house next week.  If it really does decrease gut inflammation, we may actually see some major gains (fingers crossed).

I forgot....Valtrex.

We have constipation issues - so we have found that probiotics, secretin and GF/CF diet - if followed religiously (almost) help that issue sooooooo much.
We have minor anxiety issues - which make me crave the wonderful folinic acid that helps my son self regulate and calm.
ABA - he learns new skills very well in that type of safe, predictable environment.
Fat Soluable nutrients - Omega 3 and 9s, Vitamin E, CLO.
Soon - enzymes and chelation

I see this forum topic is about a month old, but I am a new member.  So, I'll chime in on what has worked for my son over the past 5 years.

Initially, the GFCF diet was great.  I put him on the diet at age 19 months, only a few weeks after his big regression.  I truly believe it halted the downward spiral.  We were GFCF for only 6 months, but getting his newly damaged gut healed so early probably saved us a lot of future hassle and pain.  Now, I used GFCF and non-GFCF foods; most all are organic and made from scratch as much as possible.

As far as supplements:  OMEGA 3 FATTY ACIDS!   My son was one of the kids that began talking within days of starting Nordic Naturals ProEFA at age 30 months.  You can read more about these kids (not mine, specifically) in a book called "The Late Talker" (Lisa Geng) or on a Yahoo group called Apraxickids (I think that is the name).  Fish oil also cleared up my son's chronic ear wax and his low tone.  I use Nordic Naturals, exclusively, for the whole family; but there are other options out there.

A product called Methyl-Guard by Thorne Research also helped tons with language. It is basically methylB12, folate, B6 and TMG.  I used it for about 9 months.  My son immediately went from 1-2 word combinations to 2-5 word combinations afte starting this supplement.

Antivirals were great, too.  Specifically, Lysine and Olive Leaf Extract (OLE).  He just seemed less Autistic very quickly.  He actually broke out in a rash on his low back after starting OLE which coincided with the gains seen.  The rash lasted 1 week and never reappeared.   Lysine dried up 2 stubborn plantar warts on his feet within 3 weeks.

Treating parasites also made a huge difference.  My son had pinworms.  I used Vermox (a pharmaceutical) which made all of this nail biting, poor sleeping, dark circles and anal itching disappear in 3 days.  His therapists were saying, "That is just what Autistic kids do." when I would comment on the anal digging.  How little they know!

Lastly, chelation.  I use DMSA in low doses.  My son has lead coming out in high levels.  Not sure where that is coming from, but he did spend his first 2 years sucking on Thomas the Train.  Within 1 week of starting oral DMSA, my son night-time potty trained in 1 day.  He had a wet pull-up nightly for 5 years and suddenly it was dry.  He has NEVER had an accident since then.  I was stunned.  We don't even have to limit his liquid intake at night.  It just seemed like a sensory awareness tool clicked in his brain.  Now we can start saving for college instead of buying pull-ups!

I hope this helps someone.  I know we all have different stories and different successes with supplements, therapy and diet.  It is often a game of trial and error/ hit or miss.  It is just so overwhelmingly obvious to me that these children have real medical issues that need attention in order to alleviate symptoms and increase their quality of life.  None of what I have done thus far has been my magic bullet, but each piece has made my son a happier and healthier little boy.

In the beginning it was tough to get all of the recommended supplements in to him over the span of a day.  A lot of time was spent trying to hide things in juice or food.  Open and dump capsules! I didn't do everything at once, though. I tried to pick/choose the necessary things and forgo the products that appeared on the market almost daily that claimed to be THE ONE that will heal my child.  Once my son started swallowing pills, it got a lot easier.  He has always taken fish oil right off of a spoon.  We call it his 'talking medicine'.  He has been a trooper.  For us, it was best not to try to fool him, but instead be very forward about these pills are something he just needs to take.  He never refuses.  I think it has been a part of his life for so long that he doesn't know any other way.  I can't imagine trying to get a 5 year old to take all of these things for the first time!  I've been mulling over restarting the GFCF diet but that challenge seems overwhelming.  I don't know if I could get my kids to eat the GFCF breads and give up cheesy things.

Even typical kids should learn how to swallow small pills.  My nieces and nephews have immune issues that have required medicine over the years.  At age 12, my niece still needs to have meds specially mixed to liquid.  All that extra junk added to make meds palatable can't be good.  The last DAN! conference had a session on how to take pills, give injections and such.  "The Enforcer"!  I love it.

I'm a little overwhelmed by all the different treatments being talked about at the moment. I don't quite know where to begin! Our youngest just has omega 3 fish oils and gojii juice as that is all we can get him to take. He's still only 4 yrs old and I'm not sure if we are giving him everything we could to help him. We don't have any support for this kind of thing in the UK and I kind of feel totally under qualified to know where to even start. Has anyone got any basic suggestions. The only thing we have thought about previously is the GF CF diet, but his diet is so limited the dietitian didn't recommend it. Help?

I use kirkman labs too. I have to put everything in food or drink as well but he can't be drinking stuff all day long! LOL!

We started GFCF in November with our 12 yr old son.  He was the typical picky eater (spaghetti, crackers, cereal and pizza an some meat).  Now he eats al kinds of healthy food like mushrooms, spinach, mandrin oranges carrots, and just last night dried cranberries.   He still doesn't like things mixed.  Occasionally, we have make your own chef salad for supper.  He eats lettuce, carrots, mushrooms, ham and egg all in separate piles on a plate.   

Do I wish we had tried GFCF earlier?  Yes.  But he was the healthiest person in the family -- never sick, no ear infections, we thought no digestive issues.  (He could go a week or more with out a bm and then have a normal bm.  We were told it was sensory issues.  Within 2 weeks of GFCF he started having daily bm.)   We didn't try GFCF earlier because everyone we knew who had tried it had a child who had digestive issues or were sick often.  I didn't realize you can be too healthy.  Thank you Becky for the book Changing the Course of Autism! 

He also takes cod liver oil.  At first we had to talk him into it & have a drink ready for after.  Now he likes it and just takes it. 

We have seen better language, understanding of what is being taught in school, and better behavior.  He is actually starting to want friends and to play more typical age appropriate games and activities.    After the boys came in from outside playing together, Justin (our 9yr old NT son) said to me "Mom I am so happy, I have been waiting my whole life to have my brother."

Tim's school has noticed the difference to the point that they buy him GFCF treats and have gone out of their way to keep him on GFCF food.  When Tim is having an bad day even the skeptics in our lives now say "what did he get into" or "did he get his oil". 

He still not "cured"  or "typical" but his life and our family life have greatly improved.

http://www.oralflo.com/

Its a cup that helps you to swallow pills. It helps us tremendously!

Last edited by jalyce (2008-04-16 02:57:57)